I saw the Neuro in Nottingham on Thursday and after a pretty thorough consultation, we agreed that a course of steroids was the best option.
(incidentally he looked a bit confused as to why I'd waited so long to come in - hey, I was just acting on your colleague's advice and trying to be a good boy!)
As the clinic is closed over the weekend, a 5-day course of oral steroids seemed the best option - aside from cutting the trips to the clinic, the idea of having a cannula in my wrist all weekend while trying to fend off my grabby 1yr-old daughter sold the oral option to me.
Here's my current diet o' drugs
- Oxybutynin 5mg - to reduce the seemingly endless need to urinate.
- Mebeverine 135mg - to regulate "fecal urgency" (what a lovely phrase!).
- Gabapentin 300mg - for the crippling pains I wrote about before. To be honest the steroids have been taking care of them but you have to take Gabapentin on a reducing dose, you can't just stop.
Plus my standard multivitamins and fish oil supplements.
Lunch - where the fun begins
- Lansoprazole 30mg - oral steroids are so intense that you have to line your stomach with these little beauties 30-60mins before you take them with food - nice.
- Methylprednisolone 100mg x 5 - the main course, if you like.
Now if these bad boys had a advertising slogan it would probably be something like:
All the metallic taste you know and love - now longer lasting and in a convenient* tablet form!
Obviously, you have to take these with food so everything you eat tastes like shit too.
Plus if it's a Rebif day, I have to take Ibuprofen before I inject in the evening.
So I'm 3 days in. The oral variety doesn't have the "jolt" you get from IV steroids, but yesterday I was able to stand and prepare Evie's lunch. I haven't been able to stand that long for ages so this was a big deal.
Then I managed to vacuum the house (in stages - I'm not insane).
But the hardest thing about this relapse has been how little I've been able to do round the house.
Previously it's just been me and Emma. With Evie on the scene, Emma's had to bear the brunt of the housework and the childcare, as well as returning to work part-time.
Our families have been amazing, taking us to appointments and getting us out of the house, bringing food parcels, etc.
And it can't be massively easy for my 66yr old mother (used to accompanying my 91yr old grandmother to appointments) watching her youngest son staggering around a clinic.
Ah well - last day of steroids is tomorrow.